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Join the Movement

This week marks National Infertility Awareness Week. It’s the infertility community’s biggest of events, held as we all catch our united breaths and sit on the precipice of that most painful of national holidays – Mother’s Day.

RESOLVE has selected the theme of “Join the Movement” for this year’s Bloggers Unite challenge. The Blog Challenge seeks, “to bring together bloggers to talk about how you are making the difference in ways large and small in the lives of people with infertility.” How am I making a difference? Am I making a difference? I honestly don’t know. All I do know is that my life would look much different, much darker right now were it not for our decision to break the silence of our infertility, turn heartache to activism, and establish and foster a multitude of support networks in our lives. We never set out to be advocates; we just needed to find a way to get through the day. When my mother died of cancer in 2002 no one asked me to make a difference or join a movement; I grieved, I grew, and I learned to live on. First, from day to day, then month to month, and, ultimately, year to year. I figured I’d apply the same approach to infertility.

Mr. But IF and I officially announced our infertility to the world on February 16, 2012. After 20 months trying to conceive our first child, 2 serious medical diagnoses (with another unknowingly on the way), and 1 ectopic pregnancy terminated at just past 6 weeks with the chemotherapy drug methotrexate, we were tired, lost, and alone. We had the support of close friends and family earlier on in the struggle, but everything was handled with a hush and a whisper, a gentle hand on the shoulder and a knowing look, and a whole lot of hoping no one outside of that tiny inner sanctum would ask any questions. We lived like so many others in the trenches of infertility live; composed of 1 part false bravado and 1 part shell shock. Then, the word “personhood” hit that 24/7 national media cycle.

In case your last name is Van Winkle and you’ve been in hibernation for the past year, personhood has become the rallying call of many anti-abortion/pro-life advocates in this country. By defining the start of life as the time when sperm first fertilizes egg, personhood advocates seek to grant all the legal rights, privileges, and protections of a human being to the tiniest of embryos. Primarily done in an effort to criminalize all abortions (the tagline for PersonhoodUSA is “protecting the pre-born by love and by law”), personhood legislation and amendments have the potential to have serious chilling effects on many types of infertility treatments and medically necessary “life of mother” abortions in this country. If we define life as the merging of sperm and egg to create embryo, then infertility treatments such as in-vitro fertilization, during which these fertilized-embryo-proto-“humans” may be subject to some risk, could be akin to murder even though the ultimate goal of these procedures are the creation, not the ending, of life. Similarly, women such as myself, women who made that debilitating walk into maternity triage pregnant with a doomed ectopic pregnancy and out of maternity triage having poisoned their much wanted child could be turned away at the hospital doors or watch the doctors that treated them be brought up on manslaughter charges. On February 12 of last year I had enough. I posted a link to a newspaper article detailing the potential pitfalls of Virginia’s proposed personhood bill on my Facebook wall and explained that, “As the survivor of an ectopic pregnancy, I find legislation like this equal parts disturbing and infuriating. No matter what you think about abortion, nobody should ever have to risk their life hoping a non-viable fetus will naturally miscarry. I can say first hand that the experience is traumatic enough without injecting politics into the mix.” I sat back, held my breath, and waited for the anticipated fallout.

I almost think I wanted a battle. I wanted controversy, I wanted someone to scream at, I wanted to make ample use of that “unfriend” button. Looking back now I know I was grieving for the pregnancy we’d lost just 3 months earlier. With each new personhood article that hit local and national media sources, I found myself attracted to the comments section like they were my own personal train wreck. I added my own comments, told my own fresh story to the frenzied gaggle of anonymous Internet commentators, and watched as I was called a murderer, a selfish whore, a baby-killer, and worse for choosing my own life over that of a mass of cells in my fallopian tube that had not one single hope of ever becoming a human being. I think I may have actually liked it, or maybe thought I deserved it. I was in so much pain, so very lost and confused, that the hatred and scorn of the Internet masses was actually something I sought out. If I couldn’t talk to anyone in my real life about the baby I had killed, at least I had the faceless mob that wanted me to bleed out before ending my pregnancy to confide in. When the flagellation of anonymous strangers ceased being enough, I brought my story to those I know in real life. I almost couldn’t believe it when all that was doled out to me in return was a helping of love and support bigger than I could have ever dreamed. I didn’t get my confrontation; instead, I got love. And, only through that love did I learn to forgive myself.

Because a gal can never have enough of a good thing (shoes, jewelry, trans-vaginal ultrasounds…), I went from hiding my infertility to shouting it from the rooftops in about a month’s time. On March 20, 2012, I announced my intention to walk in RESOLVE’s inaugural Washington, D.C. Walk of Hope; on April 4, 2012, I presided over the first meeting of my RESOLVE peer-led infertility support group; and, during Infertility Awareness Week last year, Mr. But IF and I attended a local RESOLVE fundraising dinner organized by a support group member.

I think it matters that our infertility 0 to 60mph in 10 seconds flat happened during a four month time span during which we were not permitted to try and conceive. After receiving a methotrexate injection to terminate my ectopic pregnancy on November 18, 2011, we were forced to wait three months for the drug to leave my system and for my folic acid levels to return to adequate preconception levels. Methotrexate works by attacking rapidly growing cells in the body and thus is great at killing cancer and embryos alike. It’s also a folic acid antagonist and totally depletes the body’s stores of this most essential of prenatal vitamins. While we waited we went to our first reproductive endocrinologist and jumped through what we assumed would be a bunch of pointless diagnostic hoops (hey, doc, I know what the problem is! I don’t ovulate!), only to discover during my first HSG that both of my fallopian tubes were proximally blocked. Hashimoto’s, PCOS, anovulation, ectopic pregnancy, blocked fallopian tubes? I was about to shout infertility Yahtzee in the months leading up to our public infertility confessional. I needed to do something – anything – to help keep focus, to help maintain sanity, to help me find a reason to get out of the bed in the morning and lay my head down to sleep at night. Fundraising? Sure. Support groups? Why not. Dinner out? Sign me up. Hell, had someone asked me to discuss our infertility on a tabloid news program, write a tell-all book, or become medical test subject for fledgling ultrasound probers, I probably would have done it. Anything was better that waiting and remembering, waiting and wondering.

Something funny happened along the way, though. All these avoidant behaviors, these selfish distractions, they did a lot more than help me pass the time. They did something that no amount of openness with fertile friends and family members could have ever done. These activities normalized my experience, they let me know I was most certainly not alone in my feelings of pain and powerlessness. And, not the least of which, anger at an insurance system that was well within their rights to tell me the surgical removal of my endometriosis was akin to breast augmentation because that surgery might help me make the “lifestyle choice” to become pregnant.

When my mother died I rebuked all the attempts of others to tell me that they understood my sorrow and had walked in my shoes. My mother lost her battle with cancer 14 agonizing months and 1 brief remission after her initial diagnosis. We rushed her to the hospital on my 18th birthday when I was home from college for Fall Break, I was told of her diagnosis a month later when I was home for Thanksgiving, and I spent the bulk of my Christmas break that year pleading with her in vain to let me withdraw from school so I could be home for her treatments. We lost her the following Christmas. I was 19; she was 48. During the funeral and for many months after friends and family offered endless thoughts and condolences for which I’ll be eternally grateful. All offers of support were welcome, save one. Each time a friendly face recounted how hard it was for them to lose a parent or grandparent I couldn’t stand it. 90 year old grandparents are supposed to die, men and women in their 50’s and 60’s are supposed to face their own parent’s mortality. A college sophomore isn’t supposed to watch her once-vibrant mother waste away to skin and bones in the matter of 14 months. I have exactly three childhood friends who are allowed to talk to me about my pain like that. One lost her mother much younger than I to sudden cardiac arrest, and the other two, sisters, lost their father to cancer a few months after my mom passed. Beyond those three, however, no one is allowed to try and normalize my experience. I built this wall around myself to keep out all such attempts to share in my pain and commiserate.

That wall was still there when infertility and pregnancy loss entered my world. I was determined that no one knew my pain, and no one had a right to compare their pain with mine. Yes, I had my lovely gals in the computer, but the mere act of having friends in the computer in the first place just served to reinforce my otherness. Normal women, fertile women – they don’t have friends in the computer. Only lonely, broken me had those. But, oh how wrong I was. How wonderfully and how sadly wrong I was. As with coming out to friends and family beforehand, becoming involved in the real life infertility support and advocacy communities challenged my preconceptions and base assumptions.

The 2012 Washington, D.C. RESOLVE Walk of Hope

I signed up for last year’s Walk of Hope on a whim and was attracted to the event because, unlike so many other fundraising walks, no minimum monetary goal was required and no registration cost would be assessed. RESOLVE recommended a $100 goal, and I stuck with that default knowing no harm would be done if I couldn’t meet it. $780 later, my preconceptions were shattered. As I’ve discussed before, my biggest fear when founding my peer-led support group was that I’d be alone in the room with Mr. But IF and without any support group coffee. In the past year our smallest gathering included 8 women and men, and our “surviving the holidays” special December meeting stretched our small conference room to the max with a total of 23 attendees. There went another blind assumption. Even when we announced our struggles to friends and family, I expected some push back, some controversy, especially from one particular wing of our family. The very same relative from whom we expected the greatest judgement was the first to let us know of her own struggles with back to back ectopic pregnancies. Another lesson in don’t judge a book by its fertile-appearing cover.

Unfortunately, far too many people know my pain, live my pain, survived my pain. That 1 in 8 figure? It’s never been clearer to me than when I walked alongside 720 other brave women and men in three states who had raised tens of thousands of dollars for RESOLVE; than when we go around the table and share our stories each month at our support group; than when my infertility announcement on Facebook was greeted with 5 private messages within a week from high school, college, and professional friends and acquaintances – all young, educated, successful women – who told me of their own silent struggles with infertility and pregnancy loss.

So, how did I “Join the Movement?” I didn’t join the movement, I was saved by the movement. At best, I’m an accidental activist. After my mom died, I found a strength in myself I didn’t know was there, I found a man by my side I’d someday call my husband, and I found a drive to make my mother’s life’s work, her self-proclaimed greatest achievement, her daughter, a woman she’d be proud of. Through that experience I learned that my personal and professional successes – what some might view as solely selfish pursuits – are things far beyond myself. Less than three weeks removed from Mother’s Day, here I am embracing the greatest gift she gave to me. The knowledge that, through living a life she’d be proud of, I’m making a difference. My path on this long journey of infertility is a similar one. I make a difference by living my life, raising my voice, and walking alongside countless others. Actions rooted in self-preservation walk on their own legs and leave their own legacies. I join the movement by living it – and, that’s alright.

For more information about infertility and National Infertility Awareness Week, please see the following helpful links from RESOLVE:

Wow. As I was reading this post, I came across tons of things I wanted to comment on, but as I finished reading this beautiful piece of writing, I became speechless. What a story. What an eloquent way of speaking out and showing us – all of us, fertiles and infertiles – how crucial this movement is. I’m so sorry for the loss of your mother and for the loss of your pregnancy. I am so sorry for judgment that you’ve received along the way and sometimes even worse – the platitudes and normalizing comments you’ve had to smile and nod through. What a powerful voice you have. You are a cornerstone in this movement. And also…I think you should win best blog. Just sayin.

Thank you for your extremely thoughtful comments and for all you do with the IF community. I’m 5 1/2 years in and have had many of your similar thoughts and experiences. I am sorry that you have had to endure losing your mother at such a young age. Seems unfair that you’ve had to go through two very painful events in your life within a short span of each other.

Infertility has knocked me to my core. It may be because I haven’t had to go through anything that hard in my life before and was unequipped to know how to deal with something so, so hard. It’s made me so much more empathetic to others going through a hard time in which I don’t understand. Am I grateful for that? Probably. But I also don’t wish this on anyone and wish that I hadn’t needed to experience some of the depression that came along with the downs that infertility brings us.

Resolve is amazing and Resolve support group leaders should be commended. I don’t know what I would have done without our person like you who puts in a lot of effort to keep the group going. THANK YOU for giving your time and energy toward that. That is HUGE.

Long comment I know, but you had so many great points and your post really hit me. Thank you for sharing your life, your struggles and your giving back. Your mom would be proud. I know we are. I know I am.